Saturday, April 20, 2013

A while back, our friends The Andersons mentioned there was a Kid's marathon--where the kids have from January 1-April 19th to log 25.2 miles. The last mile would be run on the marathon course with the rest of the runners.

That day was today--a beautiful but windy cool morning. The kids were excited! The staff let us park closely. As far as I could tell, Elena and Avery were the only motor-impaired kids running this final mile.

Pre-race

Team Doodle

Running friends

We waited in line for at least 20 minutes, the kids trying to stay warm in the cold breeze. Once we started running, everyone warmed up quickly.

And we're off!

I thought E would do her usual run-and-stop. SHE DIDN'T. Maybe it was the thrill of the race, maybe it's her increased endurance--but she never stopped. She took a few walk breaks, but really, not too many.

E and Viv stayed together for most of the mile

Elena wanted water a little over halfway; I told her with real races, they have water stations. I told her she was supposed to grab a cup of water, on the run--take a drink and throw the rest. We had a few mock-water practices--when the moment came, she was thrilled to do it like a real marathoner!

Didn't skip a beat--that's her cup after she's done (on the left)

Jason and Viv started pulling away near the end of the mile. We were all cheering for each other!

E can see the finish!

Elena's mile race before this was the Jingle Bell Run; it took her 28 minutes, which was her typical pace pre-marathon training.

Elena finished her mile in 17 minutes, 30 seconds (new personal record!!) Vivian finished in ~15 minutes. Both girls were tired and very proud of themselves!!

We met up with Avery and her family after the race--she got her own personal best time too! Then it was off for brunch--in their new medals!

Runners!

Thanks to tbe Blue Ridge Marathon staff--especially for the golf cart ride back to our car, and a HUGE thank you to Mr. Keith (our Feldenkrais practitioner) for coming to cheer us on! It was a beautiful day, with wonderful people, and a fun event!

Sunday, April 14, 2013

I wish I could bottle this time in my life and keep it forever. I keep taking pictures but I wish I could preserve my feelings--things are going so well with us (all-around) that I am bursting with contentment.

Vivian is getting so big and independent. She loves school, is trying to read, constantly makes us laugh. She's hilariously expressive. She just shines.

Elena is simply AMAZING these days. She can now put on her shoes and braces by herself--about 80% of the time, without trouble. It does take a while, so we put them on for her on school mornings. Still--pretty huge.

E puts on her KiddieGaits--these new ones have demo covers

She is playing on the big playground at school--no small feat, as she needs to climb up a big ladder and stay safe among other kids and fall hazards--all down a huge grass hill. She went on longer bike rides--today, she rode for 2 miles (there is a paved trail we like to bike) which is her furthest to date. Her feet still come off the pedals when she gets too tired, but that will improve with practice, as will tackling hills.

2 mile bike ride!

Elena can carry things--like a preschool chair to sit on--to another room (with one hand on the wall most of the time). Sometimes we let her bring her (glass and ceramic) dishes to the sink, and she hasn't dropped any yet!

Almost clearing the tire obstacles at PT!

Last week, E walked to and from the car to her Brownie meeting. I got this video at the end of the meeting. She looks great!!!

Hippotheraphy/riding lessons have started up again! Elena has "graduated" to longer lessons, including horsemanship and learning to be an independent rider. She is riding a new pony to the stable, Pinky. She looks so grown-up here, oh my goodness.

Riding Pinky

E and Vivian wanted to come to my soccer game this afternoon--it was beautiful outside, but a long time to be without shade (especially after a long bike ride in the morning) and both girls stayed the whole game and played with friends.

E and O pass the ball

I tried to observe them when I could from the field--and once I saw E's crutches on the ground, and wondered where she was. I made a few passes, a run, and then subbed out to see if she was okay--she was kicking the ball, by herself, on the (terribly patchy) grass field and had been for some time. I rushed to get my phone, huffing and puffing, to try to catch that moment.

t's not much, but here it is:

THIS IS A BIG DEAL. Not only does she have the confidence to try this among tons of strangers and other kids nearby, but she was successful. She is getting better at her side-step to catch her balance--you don't necessarily see it here b/c the video is short and she does fall, but it's a pretty big improvement. She falls and keeps trying. This is after a long morning bike ride, and nearly 2 hours in the sun, playing with friends and watching the game. I'm wicked proud of her.

After the game, Elena and I passed the ball back and forth to go shoot on the goal. A bunch of other kids followed us. We took turns being goalie, and each kid got to shoot (one kick at close range). All the kids got to score a few, and all the keepers got to save a few. I've never seen Elena be such a "normal" kid among strangers...it was a dream come true.

I'm so grateful to all who have helped us come this far--especially our main PT Theresa, West City Soccer, and her educators at school. We wouldn't be at this moment without you.

Thursday, April 4, 2013

Things are crazy busy here. In the past month, we've had sickness, health, travel, sleepovers, and spring break, not always in that order.

Here are pictures of the splints on E's legs:

Splints and a smile

close up

These splints are basically polyester backing over some semi-flexible metal rods, secured around her legs (knees) with three fat velcro bands. They are relatively easy to put on. Elena has never tried to take them off herself. We have other types of braces--her DynaSplint and her night brace (basically an open AFO) but her night brace is now too small (we had it made years ago, and couldn't wear it due to our nighttime issues) and she prefers these splints to the DynaSplint (although I'd prefer to switch to them b/c she can bend a knee if necessary). Anyway--

Side view progression:

First Day

Current

Rear View:

First Day

Current

When I take pictures I do not give Elena any cues on how to stand, lean, etc. I take pictures almost every morning, and I have noticed a shift in standing (static position)--her position is taller and more upright. Her heels are down more, but I think that is just due to standing practice, not due to the splints.

As far as other changes, I have noticed two: she is slightly easier to stretch during our nightly hamstring stretches, and when walking barefoot she does not fall as often. I need to clarify that when she walks barefoot, she is on her toes, with her knees bent. I think of this as "walking while falling", if there isn't a place for her to run into to stop. Sometimes she only takes a few steps and gets frustrated when she falls--this used to happen all the time. I can say with conviction this happens MUCH less in the past few weeks, an observation I just realized.

On the negative side, Elena does not sleep through the night while wearing the splints. She typically wakes up 2-5 hours in, calls for me, and I remove them. This means both of us wake up at least once per night (I am a very light sleeper). I don't like to interrupt her sleep, but the interruption is quick and doesn't seem to bother her. I feel that if she goes to sleep while wearing the splints (which she does well), she'll eventually get used to wearing them for longer periods of time. So far that hasn't really happened, but we'll wait and see.

Recent Doodle Updates

INSTAGRAM

Search This Blog

Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.